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When leukemia strikes, family pulls together

At first, Lola Johnson's parents thought it was just a cold, or perhaps a touch of flu.

After all, Lola had been a happy, seemingly healthy infant through the first year of her life.

On New Year's Day, though, things changed.

The result was a frightening diagnosis — leukemia — and a sudden, drastic change in the life of the Johnsons.

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Lola's mother, Sabrina Johnson, is a police officer and a Benson High grad who coached volleyball there for seven years.

Her husband, Michael Johnson, played basketball at Oregon State from 2003-07.

Lola's grandfather, Steve Johnson, is one of the greats in OSU history and was an All-Star center for the Trail Blazers.

Her grandmother, Janice Johnson, is daughter of the late Stu Inman, the original director of player personnel for the Blazers.

Steve and Janice have four children and seven grandchildren, including Orlando, Lola's 4-year-old brother.

It's the youngest, Lola, they are worried about most.

"This has been an ordeal," says Steve, 60. "But I've been pleased to see how this family has pulled together. We've been great support for one another."

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Lola, now 16 months old, had been sick around Thanksgiving, but her parents didn't think much of it. When it lingered, they took her to their family doctor in Tigard. He diagnosed bronchiolitis. When it failed to clear up in a month, Lola was put on antibiotics. That didn't help, either.

"We watched her lose color in her face," says Sabrina, 28. "She lost weight, wasn't eating or walking anymore. We were told she probably had another virus. They were going to try more antibiotics."

On Jan. 1, Sabrina was preparing to go to work. She started to give Lola a bath, but the toddler fell over in the bathtub and couldn't hold herself up. After a call to an advice nurse, the Johnsons brought her to Doernbecher Children's Hospital's emergency room. Lola was given oxygen, and blood work was done. During that time, the "L" word was mentioned as a possibility.

Lola was admitted to intensive care and stayed in the hospital for a couple of nights before the blood results were delivered. In the meantime, her parents were left to ponder the situation.

Sabrina has friends with a child who has leukemia.

"There were times when the thought of leukemia crossed my mind," she says. "As a parent, you're like, 'No.' "

"After the doctor left the room, I turned to Michael and said, 'I knew it,'" Sabrina says. "Deep down, I had a feeling. I hadn't mentioned the word 'leukemia' to him before. It was weird to have to say it."

Neither Sabrina nor Michael had any instance of leukemia in their families.

"You get asked it when you go to the doctor— 'Is there any history of cancer in your family?'" Sabrina says. "We've always been able to say 'no.'"

Her husband had held out hope their daughter's ailment wasn't serious.

"When we took her to hospital, I knew she was in bad shape, but I didn't think she was in that bad shape," says Michael, 34, who manages a Sherwin-Williams store in Sherwood. "When we got her to the ER, they had like 10 people in the room, and it was like, 'Whoa.'

"When they got her stabilized and we got her back in the room, Sabrina said they were doing blood work. I was thinking, 'It's probably nothing too bad.' Then the doctor said, 'We're concerned about the possibility of leukemia,' and your skin crawls."

Lola's grandfather, as you might imagine, was a basket case.

"It's the absolute worst feeling," Steve Johnson says. "I struggle when kids are sick and there's nothing you can do about it. But this? I'm a worst-case scenario guy. It was just a crushing thought."

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When Lola was admitted to Doernbecher, "they said her blood counts were the lowest they've ever seen," Michael says. "She was so weak. She was struggling to breathe. She basically wouldn't eat anymore. She was wasting away. She had no energy. She stopped smiling, stopped responding (to stimuli). It was tough to see."

Within a couple of days, Lola began the first of four rounds of chemotherapy at Doernbecher— twice a day for 10 days.

"She did OK — better than I'd anticipated," Sabrina says. "I anticipated it being painful and horrible, but she was really tough through it.

"She looked so bad when she first got here. With the first dose of chemo — even how potent it is — her color started to come back. She was starting to look and act like she had before."

There were no side effects other than some rashes and vomiting. Shortly after the end of the 10 days, the Johnsons were able to take Lola home until the next round of chemo. Her blood count recovery was on track.

But doctors were puzzled by the results of three bone marrow biopsies while Lola was at the hospital.

"That became the rough part," Sabrina says. "The biopsies came back inconclusive, which means there is not enough in any cells in her bone marrow to reach a definitive answer about whether or not she's in remission. Although the doctors weren't seeing leukemia cells, they can't say she's in remission.

"They're a little baffled by it — not that her bone marrow is not coming back with enough cells, but because she is producing healthy blood cells on her own."

Lola's current blood counts are like those of a child who has never had leukemia or taken chemo. She has gained eight pounds in the two-plus months since she entered the hospital. She has her appetite back, her hair is starting to grow back, and she is producing healthy blood cells.

"So the decision was made that the smartest thing to do was to start round two of chemo, because her body is showing us that the bone marrow is working," Sabrina says. "We're just waiting to see now if anything will change."

By most indications, though, Lola is doing well.

"After she started chemo, to see her come back to life a little bit was uplifting," Michael says. "When we heard her giggling for the first time, it woke us up a little bit from our 'woe is me' attitude. From then on, we've had a good attitude about it. To see her laughing and playing again, that's been super powerful."

"The doctor use the term 'legend,'" Sabrina says. "She's a legend on this floor because of how low her counts were when she first got here."

The Johnsons knew the medical costs would go far beyond what their insurance will provide. In addition, both parents will have to take time away from work to be at the hospital with Lola.

On Jan. 20, Sabrina's aunt, Dawn Nelson, started a GoFundMe campaign to raise funds to offset costs, with a goal of $50,000. As of March 6, more than $20,000 had been raised, with contributions from 206 donors.

"It is the biggest relief ever," Sabrina says. "Between our jobs, we will eventually exhaust all of our time off. I have a little bit of time off left, but Michael doesn't. And when he doesn't get to go to work, it's lost wages.

"We know this is going to be a long journey. It's a huge relief to know we get to keep our house and our cars and can still live life day to day, especially with Orlando thrown into it."

The source of donors to Lola's fund has been gratifying to the Johnsons.

"We've seen names of people donating we're really close to who are in our lives regularly," Sabrina says. "We've also seen names of people we haven't talked to in years, or just strangers. The police community is so overwhelmingly supportive of each other that it took me aback. Even outside of that, people who just run across her GoFundMe (account) and care so much about her doing better ... it's overwhelming."

(For those interested in making a donation, here is a link to Lola's account: https://www.gofundme.com/teamlolacruz-fights-leukemia.)

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The Johnsons are cautiously optimistic about their daughter's recovery.

"The prognosis for juvenile leukemia is good," Sabrina says. "Kids are resilient, and they go through the process much better than adults. We have yet to hear anyone say they don't expect her to do well, but there's always that chance.

"She has done well with chemo. The biggest risk for her is infection. Keeping her environment (sterile) is important."

The Johnsons are fortunate they got Lola to the hospital when they did.

"Before we snapped ourselves out of our funk, we had those 'What if' moments," Sabrina says. "What if I'd left for work and she'd have gone down for a nap? Because she had been sleeping so much, we'd have just thought it was normal. We might not have her now had we not gone in that day."

Doctors aren't sure yet that Lola has reached the remission stage, though they're hopeful. Leukemia patients aren't considered safe until they've been in remission for five years.

"Until then, we'll be coming in for blood work regularly," Sabrina says. Five years beyond the beginning of remission, "then we can probably stop sanitizing every single doorknob. Until then, that's what we're doing."

Michael says he has not asked doctors for a prognosis on his daughter's recovery.

"At first, I was asking a lot of questions," he says. "I wanted to understand it. But I got to the point that if I understood enough of it, I didn't care about the prognosis.

"I'm not really a man of faith, but I do have faith. I know she's going to be good. I didn't care whether (the prognosis) was good or bad; it wasn't going to change anything. I'm going to take it one day at a time. I'm going to enjoy my time with her."

And, with good fortune, that time will be for many, many years.

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